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The Monday after National Diabetes Week is a chance to take stock, take a deep breath and take a moment to look back over the busy days.

This year’s campaign was terrific in that the messaging was strong and it got a lot of attention. It was great to see the same information being rolled out across the country, and shared internationally, too. I certainly believe the campaign’s main theme of needing to detect and treat all types of diabetes sooner resonated with people across the globe.

So, there are some of my highlights from last week:

Frank Sita can certainly claim best on ground for his relentless support of the campaign. He blogged, vlogged and SoMe’d the hell out of the campaign and was also interviewed in a great piece for The West Australian newspaper. (Plus, he nailed the #LanguageMatters talk with the journalist.) Nice work, Frank!

Diabetes NSW & ACT held their Diabetes Australia Research Program Awards on Thursday night, using NDW as an opportunity to underline the importance of research, and recognise just some of the wonderful researchers working to unwrap the secrets of diabetes.

There are far too many stories of missed type 1 diabetes diagnosis, and many were featured last week. You can see these stories on the Diabetes Australia Facebook page. It’s simply not good enough that people have to become really, really sick before they are correctly diagnosed. Everyone must know the 4Ts.

 

There was a most welcome announcement with Health Minister Greg Hunt launching Australia’s first national diabetes eye screening program to reduce vision loss and blindness in people with diabetes. this is a great example of Government, and industry (Specsavers will also be contributing to the program) working together and with health groups to support people with diabetes.

Bill Shorten’s Friday evening call to the Government to broaden CGM funding was beautifully timed and was a great way to end the week, providing an awesome bookmark to the previous week’s piece on The Project.

 

Theresa May would have no idea that she provided an outstanding opportunity for us to get in a little #NDW2018 last-minute advocacy and awareness across the national press, just by wearing her Libre sensor.

And so, it’s a wrap. Except, of course it isn’t. We still need to remind people of the signs and symptoms of diabetes. We need better detection programs. We need more awareness. This campaign doesn’t get boxed up and archived, never to be thought of again. We must keep talking about it.

Of course, National Diabetes Week may be over, but for those of us living with it, every week is diabetes week. And so on we go: ‘doing’, ‘living’ and ‘being’ diabetes.

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Yesterday an article was published across Australia detailing a new report showing that Australians with diabetes are missing out on the recommended levels of diabetes care. Most of these people receive their diabetes care in general practise.

A couple of things before I go on:

  1. The article was behind a paywall, but Diabetes Australia shared an image of a portion of the it, and that can be accessed here. If you have access to a News Ltd. account, you can read the article here.)
  2. I want to say that in writing this post today I do not want to be seen to be doctor-bashing. I don’t believe that is constructive in any way whatsoever. However, I do think that there needs to be acknowledgement that the level of diabetes care in general practise is not ideal for a lot of people.
  3. The language of the article was atrocious. It appeared first under the heading ‘How diabetes sufferers are dicing with death’ Seriously, journos, ready the freaking Diabetes Australia Language Position Statement.

Onwards…

There was some discussion online after the article was shared, with a few doctors believing the article wasn’t all that helpful and feeling that it was unfairly unfavourable towards GPs. Someone also commented on the language used. (I’m not sure if they meant on Twitter or in the article. The language in the article was strong and very critical of GPs.)

The report is damning, and it shows that the results for people with diabetes are not good at all with only one in three people diagnosed with diabetes receiving expected standards of diabetes care. Only half had their A1c checked, and of those, only half again were in range.

This is despite there being a documented diabetes annual cycle of care (for which GPs receive funding). If completed fully, the annual cycle of care includes: annual A1c, cholesterol, and kidney checks, weight and blood pressure checks, as well as two-yearly eye and foot checks.

For me, it shows yet again how stacked the decks are against so many people with diabetes. We don’t receive the level of care recommended and then, when we don’t meet expected outcomes, or develop diabetes-related complications, we get blamed.

If we want to talk about things that are unhelpful and not constructive, let’s begin with that.

We seem to forget that most people don’t innately know what is required to manage diabetes, or what screening checks are required – especially people newly diagnosed with the condition. A lot of people rely on their healthcare professional – in the case of diabetes, usually their GP – for this.

I’ve written before that in my case, my GP is not in any way involved in my diabetes care. This is a deliberate decision on my part. I understand it is also a privileged decision – I have easy access to my endocrinologist, and other diabetes specialists for all my diabetes healthcare needs.

But that’s not the case for everyone, and a lot of people are reliant on their GP for all their diabetes clinical care.

People with diabetes are being let down.

Even though pointing fingers and appropriating blame is not necessarily helpful, it’s what we seem to do. We can blame the system. We can blame a lack of funding. We can blame a lack of continuity of care. We can blame the fact that there are no coordinated screening programs. We can blame the need for more specialist care. We can blame a lousy and ineffective electronic records system.

But what we can’t do is blame people with diabetes. No one asks to get diabetes. No one asks to get diabetes-related complications. So how is it possible that in a system that is letting us down, we are the ones blamed when it happens?

Also, this week, we have heard story after story of missed type 1 diabetes diagnoses with people reporting that despite seeing their GP (often repeatedly) about their symptoms, they were not checked for type 1 diabetes.

It is undeniable that some GPs simply do not know enough about diabetes to diagnose it in the first place, and then to treat it in an ongoing and effective way, and this is leading to those of us living with it not receiving an adequate level of care to live as well as possible with diabetes.

While there may be some hard truths in the report, hopefully the result will be better care for people with diabetes. Because, surely, that is all that matters.

I am certain that almost all the people who read this blog are in some way affected by diabetes. (Because, really, if you are not, why would you be reading?) It makes sense that the people who want to hear about my real life with diabetes have their own real lives with diabetes.

Most of the blogs I read are to do with diabetes. Most of my interactions online are to do with diabetes (with the occasional detour down avenues of language, Nutella recipes, Effin’ Birds, and idolising Nigella).

It makes sense and there is nothing inherently wrong with focusing on things that we understand, or that is interesting to us personally. Of course we feel a connection when reading stories by others going through similar experiences, and that makes us feel safe and less alone.

This week, however, I am hoping that a lot of what we are talking about is received by people outside the diabetes world. Because #ItsAboutTime that others know and understand the importance of early diagnosis and treatment of diabetes.

It’s National Diabetes Week (#NDW2018) and Diabetes Australia’s campaign this year is building on the 2017 campaign of raising awareness of the signs and symptoms of type 1 diabetes, and the fact that there are 500,000 Australians with undiagnosed type 2 diabetes.  (Disclosure: I work for Diabetes Australia. I am writing about this because it is an important issue, not because I have been asked to.)

These days, my loved ones and I know all about the symptoms of diabetes. And somehow, I knew them just over 20 years ago when I walked into my GPs office and said ‘I’m thirsty all the time, I can’t stop peeing, I’ve lost weight and I’m exhausted. I think I have type 1 diabetes.’

My GP told me that she thought I was being a hypochondriac, so I’m actually not sure if she would have sent me off to pathology for a fasting glucose check as quickly as she did had I not prompted her with my (as it turns out correct) self-diagnosis. (In hindsight, getting me to pee on a stick would have been an even better idea, but I didn’t know that at the time…)

The rest of the story is that a few days later, I was told I had type 1 diabetes. That’s my whole story. It’s utterly, completely, totally uneventful and, quite frankly, I love that it is.

But that’s not the way it is for a lot of people. In fact, each year 640 Australians end up in hospital because the signs of type 1 diabetes have been missed. In many cases, these people have already been to see their GP one, two or more times because they , or their families, have known that there was something not quite right, and they were not checked for type 1 diabetes.

Is that your story?

Here’s the thing: if you have diabetes, or someone you are close to has been diagnosed type 1 diabetes, you know the signs. You may not have known them beforehand – in fact, you may have your own diagnosis story that mirrors those that we are sharing throughout NDW – but you know them now. You are not the target audience for this campaign.

The target audience is people in the community without a connection to diabetes. It’s GPs who are not routinely asking people to pee on a stick so they can quickly and easily check if a person has glucose in their urine.

We need to tell those people. Because we can talk all about this amongst each other all we want, but then all we are doing is adding to the noise in the echo chamber. We need to step outside of the diabetes world and shout from the rooftops 4Ts of type 1 diabetes:

These symptoms need to trigger people – everyone – to automatically think type 1 diabetes.

Share the poster. And ask everyone you know to share it too – including people not affected by diabetes. #ItsAboutTime we ALL knew the 4Ts so that we can diagnose and treat type 1 diabetes sooner.

Official ‘Look! We’re at a conference!’ photo.

One of the best things about going to diabetes conferences is finding time to speak to, and bounce ideas off, fellow people with diabetes. It’s always so great to hear others’ ideas and opinions – sometimes I find myself nodding in furious agreement, and other times their views are completely opposite to how I see things. 

A couple of weeks ago at the America Diabetes Association Annual Scientific Meeting, The Grumpy Pumper and I spoke about a post I was writing (and subsequently published last week) about using the latest diabetes technologies at diagnosis. I knew that he would have some strong thoughts on this topic. 

Grumps said he had some concerns with my ‘give us all the tech right now at diagnosis’ approach, and today, he’s written his thoughts. (Seriously – my pestering him to write is paying dividends these days! Note to self: keep on it!)

Here’s what he has to say…

_______________________________________________________

I’m not really sure if this is a What Would Grumpy Do (#WWGD) post or not. Or if it’s just rambling of the kind of crap that occupies my tiny brain on a daily basis.

Anyway…

Last week, the Nigella of the DOC posted about the use of diabetes tech and how early someone should be offered it post diagnosis(Renza note: Grumps: We’ll be talking about that nickname next time we catch up…)

This subject always interests me, and, to a point, concerns me.

Don’t get me wrong: I love the idea of everyone having the choice of whatever kit they want and need to manage their diabetes, as early as possible in their journey with diabetes, to be able to relieve their own personal burden of diabetes. This also goes for parents and carers too – (those that manage diabetes in a different way, for or with the person with diabetes, dependent on their age etc.).

Of course, the utopian world is for a fully functioning ‘Artificial Pancreas’ (AP) to be commercially available and affordable; a world where at diagnosis, everyone has access to this and the information to make an informed choice if it’s right for them; a world where for most, if not all, that burden of diabetes is not even realised…

My interest and concern?

Well, my job, (as uninteresting as it sounds to most), is business continuity. Or planning for what happens when (as an organisation) things go wrong: when technology that you rely on is unavailable; when your supply chain lets you down; when there is a skills shortage to carry out the things you need to do.

As a result, my brain (tiny as it is) constantly sees the possible risk of what could go wrong, and the mitigations and plans. (The saddest part? I actually enjoy it…)

You can maybe see where I’m trying to go with this now?

The more we rely on diabetes technology, and the earlier we do so, then we (in my opinion) need to have better contingency plans in case things go wrong.

Our ultimate safety net is hospital. However, none of us want to have that as our contingency, do we?

Continuity planning isn’t complicated: it can be detailed; it’s often dull. Ideally it never has to be implemented, but inevitably it does.

The official definition of business continuity is:

‘…the ability of an organisation to maintain essential functions during, as well as after, a disaster has occurred.’

Basically: the ability to carry out the essential things you need to do when shit goes wrong!

I’ll try and keep this brief since I can see you are already dropping off to sleep.

For me, with my diabetes management, it breaks down to this:

Essential functions (the minimum things I need to achieve):

  • Avoid DKA
  • Stay in a safe glucose range (so wider range than usual target, and sod any talk of flat lines!)
  • Be able to detect and treat hypos
  • Be able to fulfil driving regulations

Tasks I need to do to achieve the above:

  • Get a measured amount of insulin into my body
  • Be able to check my glucose levels
  • Treat a hypo when detected (meter or hypo awareness)

Critical tools needed to achieve the above:

  • Insulin
  • Insulin delivery method
  • Blood glucose monitoring system
  • Hypo treatments

The level of continuity that you wish to plan for is total up to the individual. Ideally, we usually try to plan for minimum disruption.

My current diabetes kit is:

  • Insulin
  • Insulin Pump
  • CGM
  • Blood glucose meter
  • Hypo treatments (various)

Whilst I am lucky enough to have spares for most of this kit, I, in my opinion, benefit from being old school. My journey to diabetes technology has been progressive and having started on injections (via syringe) I am confident that I have the skills to keep myself safe if all my technology failed.

As a result, my base-level back-up is:

  • Insulin
  • Syringe
  • Blood glucose meter (and of course strips)
  • Hypo treatments (or cash to purchase as a back-up to my back-up)

So, there you have my interest…

My concerns?

Skills shortage.

In that utopian world where all go onto AP at diagnosis, how do we ensure that we have the skills to stay safe if technology fails? Or if a suppler fails to be able to get a component to us? Let’s face it, a hurricane in the wrong place can cause production issues that lead to shortage of supply; transport strikes; fuel shortages. All of these, and more, have possible impacts.

So if we don’t have the skills to implement our back-up plan, then what use is it?

Some would argue that PWD would need to be educated on MDI etc., which is very true. However, it is another thing for most adults to know how to inject and actually doing it for the first time.

Then there are children with diabetes. Diagnosed as a baby and on a pump soon after, the child may never know how to inject. Until they need to. That could be a huge psychological thing for any child.

There is no one easy answer. As always, and as I said above, our ultimate safety net is hospital so we should always be safe.

But my advice to myself is:

  • Have a plan
  • Know how to use it
  • Wear sunscreen

Live Long and Bolus!

Grumps

Want more from The Grumpy Pumper? Check out his blog here. And follow him on Twitter here

I met someone the other day – a friend of a friend – who had recently been diagnosed with type 2 diabetes.

Within the first 15 minutes of our casual conversation standing in the street as the Saturday morning rush happened around us, I heard these words from their mouth:

‘It’s my own fault. I should have gone to the doctor sooner.’

‘I am not a good diabetic at all.’

‘I am doing a really bad job checking my bloods.’

‘I’m not sure how long I need to keep checking my bloods. Or how often, really.’

‘I was told if I didn’t look after myself I’d need injections. I’m terrified of needles.’

‘I have a list of foods that I should and shouldn’t eat.’

‘I’ve never been sick before. And now I feel as though people think I am sick. But I feel fine.’

‘The doctor said I don’t have diabetes too badly, but then told me all the things that could go wrong.’

‘I am scared. I don’t know anything about diabetes, but I am scared that I am going to go blind. I was told that’s what would happen.’

Here was an incredibly confident, capable and clear thinking person, not much older than me. Until now, their contact with HCPs had involved annual flu jabs (kudos for that!) and a trip to the GP for the occasional virus. They told me they’d never spent a night in hospital.

The diabetes diagnosis came about after their GP suggested routine blood checks on the day they went in for their flu shot. The following week, they were told they had diabetes. This was just last week. So far, this person had spent about fifteen minutes with their GP and 45 minutes with the diabetes educator who works out of the clinic.

And look at how diabetes has been presented in that time. Already, this person feels as though they are a ‘bad diabetic’ and failing in their treatment. And they are scared.

I responded to some of those comments gently:

‘You DID go to the doctor – for your flu shot. And when they suggested you have a blood check, you did it there and then.’  

‘You are doing a great job. There is no such thing as a bad person with diabetes. We do the best we can with the information at hand.’

‘This is all new. You are checking your blood sugar and that’s amazing. Well done. You didn’t have to even think about that two weeks ago!’ 

‘Do you have a follow up appointment? When you go back, as why you are being asked to check at the times they’ve suggested. And if this is something you’ll need to do for the next week…or month…or longer.‘ 

‘It’s perfectly understandable to be afraid of needles. I don’t know anyone who likes them. And you may need insulin one day. But not yet. And if you do, that’s not because you have failed. It’s because diabetes needs to be treated and sometimes with type 2 diabetes, (and always with type 1 diabetes) insulin is that treatment.’   

‘Have you been referred to a dietitian? It’s really hard to change the foods you’re eating if you’re not sure about diet. Ask for a referral.’  

‘I don’t really think of having diabetes as ‘being sick’, so I understand what you mean. But you will need to think about your health differently. That doesn’t make you a sick person, though.’

‘It’s perfectly, perfectly understandable to feel scared. If you think that having a chat with a psychologist or counsellor will help with that, ask your GP.’  

‘Also … find some other people with diabetes and talk with them. Here’s my number. Call me any time.’

Imagine, if instead of feeling the way they were feeling, this person felt empowered, confident and assured – even if there was a bit of fear and uncertainty in there.

On the day we are diagnosed, we walk into the GP’s surgery not having diabetes. And walk out with a diagnosis.

It starts early. Those messages at diagnosis can impact how we feel about our diabetes for a very long times – indeed the rest of our lives.

Little did I know that on 15 April 1998 my life would change forever.

Little did I know that I would learn just how strong I could be at the times I have felt most vulnerable.

Little did I know that as my beta cells were being destroyed, a fire was stirring up as I readied myself for a career in advocacy.

Little did I know the power of insulin.

Little did I know that what would save me was my peers walking the same path, before me and with me.

Little did I know that I would be able to escape into my head as I tried to make sense of diabetes, and from there I would start to share my story.

Little did I know that while I felt the health I took for granted be swept out from under me,  that I would actually become the healthiest I ever could.

Little did I know that my focus would move from music education to information provision about living well with diabetes

Little did I know that the love and support of strangers would see me through some of my darkest times.

Little did I know how much my family would rally around me, hold me up and get me through.

Little did I know that use-by dates on boxes of lancets are a waste of time!

Little did I know that sometimes, laughter, while not necessarily being the best medicine (insulin gets that award!), it is certainly what helps to make a situation manageable.

Little did I know that my then-boyfriend, now-husband, would be the greatest quiet advocate I could ever hope for.

Little did I know just how fortunate I am to have been diagnosed with diabetes living in Australia, or how uneven the diabetes landscape is for those in some parts of the world.

Little did I understand privilege.

Little did I know that I would learn to wear the badge of deliberately non-compliant defiantly, proudly, loudly.

Little did I know that the combined challenges of diabetes combined pregnancy would almost break me, the reward would be a daughter who has, every day, repaired the hurt, heartache and pain. In spades.

Little did I know that advocating for those of us affected by diabetes to be given the first seat at the table, and a microphone at a conference would be the underlying message of all my work.

Little did I know that the voices that matter are often the ones that don’t get to be heard.

Little did I know that my body would be permanently connected to technology that allows me to do the very best I can.

Little did I know that someone nodding and agreeing that my health condition sucks big time is actually all I need to hear when things are so tough.

Little did I know that while there were times the health system and the healthcare professionals within it seemed to be trying to work against whatever it as that I was achieve, once I found the ones who would listen to me and work alongside me, I have felt nothing but supported.

Little did I know that food was such a source of political angst, or something that others felt they have the right to force upon others.

Little did I know that there are so many cures for diabetes; none of which work.

Little did I know the power that words have – the power they have to build me up and to cut me down, often at the same time.

Little did I know that Twitter and Facebook would be platforms I use to share, to learn, to engage.

Little did I know that the anchors of love, support and friendship I have found in the diabetes world are just as important, if not the most important, aspect to my diabetes care.

…I know all that now. And so much more. My diabetes turns twenty this weekend, and with it, I feel a sense of achievement, relief, triumph. And deep-seated sadness, too.

I feel diabetes has taken a lot from me, but it has also given me some gifts that have shaped me into the person I am today. I feel now that I can stop feeling like a newbie in the diabetes world and perhaps stake some claim to being part of, if not the old school, the middle school.

When I was diagnosed, the idea of living with diabetes for twenty years seemed like a life sentence and I guess in some ways, it kind of is. I still fear what is around the corner; there is so much unknown about diabetes. But I feel I can look back with some pride and complete understanding of how fortunate I am. I managed to get through the first twenty years relatively unscathed – mostly through luck and circumstance.

I can’t say I’m necessary looking forward to the next twenty years of diabetes. But I’m doing all I can to be ready for it.

Things I did know: my mother’s Xmas zippoli will always – ALWAYS – be part of my eating plan!

More diaversary writing:

16 years – Diaversary: Words to 24 year old me

17 years – #DayOfDiabetes

18 years – On this day

19 years – Heart on my sleeve

In the talk I gave the other day at a diabetes educator conference, I shared my most recent A1c result with the audience. I did this after very careful consideration, because I generally don’t share that information.

But I decided that the context and situation was right – the room was full of HCPs who still often use A1c as the way to measure the success of a diabetes treatment or technology. Plus, I knew that there may be a lot of concern about the off-off-off label technology I was using. Surely a way to win over the crowd and point to the value of Loop was to play to my audience and give the crowd what they want.

When I announced my A1c to the room, the audience clapped. That’s right; they broke into spontaneous applause. I responded by asking them to stop – to please not applaud an in-range number.

I felt extraordinarily uncomfortable hearing the applause, because I couldn’t help but feel that if instead I’d declared an A1c out of range, the response would have been the sound of sharp intakes of breath. I know this, because I have spoken about high numbers before, and that is the noise a roomful of HCPs make when I talk about double-digit A1cs.

This week, I’ve been thinking a lot about how the impact of what we are told about many different aspects of diabetes – and the way things are framed – can be long lasting. And as my head is increasingly in the communication around diabetes complication space, I keep coming back to the need to reframe the way we present diabetes.

My newly-diagnosed self wouldn’t have batted an eye lid if I heard of HCPs applauding at an in-range A1c, because that was what I was told was a measure of success, and we applaud success, right? Just as that newly diagnosed me truly believed that someone being accused of failing to care for themselves because they had developed diabetes complications was a fair call.

These were the beliefs that were anchored in my mind as the absolutes of diabetes. But all they managed to do was anchor me to feeling as though I was constantly failing.

It took a long time to overcome those biases that seem to be the lifeblood of the diabetes narrative. I wish it happened sooner. I wish I hadn’t been anchored down for so long. Now I understand that we can acknowledge effort, but not applaud a number. How liberating this is; how much lighter I feel!

More musings on A1c

I don’t need an excuse

Deceptive

I was thrilled and honoured to speak in the symposium at #IDF2017 all about peer support. I shared the program with Chris Aldred, better known to all as The Grumpy Pumper, and advocate Dr Phylissa Deroze (you can – and should – find her as @not_defeated on Twitter).

Speakers in the peer support symposium at #IDF2017

When we were putting together the program for the symposium, the idea was that it would offer an overview of what peer support can look like, beginning with how diabetes organisations and community health groups can facilitate and offer a variety of peer support options, and rounding up with the perspectives of people with diabetes who provide and participate in peer support.

I spoke about how diabetes organisations in Australia, through the NDSS, offer a suite of peer support choices, urging the audience to think beyond the usual face-to-face or, increasingly, online peer support group. Activities such as camps for children and adolescents with diabetes, information events, education sessions (such as DAFNE) are all avenues for peer support. Peer support need not only take the form of a group of people sitting in a (real or virtual) room talking about diabetes in a structured or unstructured way. It can happen just by putting people with diabetes in the same space.

I’d never met Phylissa before, but I quickly learnt she is the definition of the word determined. She spoke eloquently about her own type 2 diabetes diagnosis which was anything but ideal. Instead of feeling beaten and overcome by how she had been let down by the healthcare system, she turned to her peers, finding a group that not only helped her diabetes management, but also gave her confidence to live well with diabetes.

Phylissa now facilitates an in-person support group for women with diabetes in Al Ain in the UAE, and is a huge supporter of, and believer in, the power and importance of peer to peer engagement and support in diabetes management. You can read more about Phylissa’s work on her website here.

Grumps, in true Grumps style, gave a talk about how his approach to peer support is more organic and certainly not especially structured. Although involved in some more planned peer support, he believes the most effective way he can support others with diabetes is on an individual, more informal way. Kind of like this:

Click image to see tweet.

And as if putting into practise his talk at the Congress, last week he started a conversation on Twitter about his own recent experiences of being diagnosed with an ulcer in his foot opening the door for people to speak about diabetes complications.

Click image to see tweet.

The way we speak about diabetes-related complications is often flawed. The first we hear of them is around diagnosis and they are held over us as a threat of the bad things to come if we don’t do as we are told. They are also presented to us with the equation of: Well-managed-diabetes + doing-what-the-doctors-say = no complications.

Unfortunately, it’s not that easy.

From then on, complications are spoken of in hushed-voices or accusations. Blame is apportioned to those who develop them: obviously, they failed to take care of themselves.

And because of this, for many people, the diagnosis of a diabetes-related complication is accompanied by guilt, shame and feelings of failure when really, the response should be offers of support, the best care possible and links to others going through the same thing. Peer support.

Back to Grumps’ raising diabetes complications on Twitter. After sharing his own story, suggested that we should not be ashamed to talk about complications.

That was the catalyst others needed to begin volunteering their own stories of complications diagnoses. Suddenly, people were openly speaking about diabetes complications in a matter-of-fact, open way – almost as if speaking about the weather. Some offered heartfelt sympathies, others shared tips and tricks that help them. But the overall sentiments were those of support and camaraderie.

The recurring theme of the peer support symposium at the Congress was that we need to find others we can connect with in a safe space so we can speak about the things that matter to us. It’s not the role of any organisation or HCP to set the agenda – the agenda needs to be fluid and follow whatever people with diabetes need.

END NOTE

While we’re talking peer support, how great is it to see that the weekly OzDOC tweetchat is getting a reprise this week, with Bionic Wookiee, David Burren at the helm. Drop by if you are free at the usual time: Tuesday evening at 8.30pm (AEDT). I’ll be there!

Disclosure

I was the Deputy Lead for the Living with Diabetes Stream, and an invited speaker at the 2017 IDF Congress. The International Diabetes Federation covered my travel and accommodation costs and provided me with registration to attend the Congress.

Following last week’s post about how my ADATS’ talk was received, several things happened. Firstly, I was contacted by a heap of people wanting to chat about the reaction. Secondly, I was sent several designs of logos and t-shirts with ‘deliberately non-compliant’ splashed across the front, which obviously I will now need to order and wear any time I do a talk (or am sitting opposite a diabetes healthcare professional). And thirdly, discussions started about how we manage our diabetes ‘off label’.

While off label generally refers to how drugs are used in ways other than as prescribed, it has also come to mean the way we tweak any aspect of treatment to try to find ways to make diabetes less tiresome, less burdensome, less annoying.

When it comes to making diabetes manageable and working out how to fit it into my life as easily and unobtrusively as possible, I am all about off label. And I learnt that very early on.

Change your pen tip after every use.’ I was told the day after I was diagnosed, meeting with a diabetes educator the first time. ‘Of course,’ I said earnestly, staring intently at the photos of magnified needles showing how blunt the needles become after repeated use. ‘Lancets are single use too.’ I nodded, promising to discard my lancets after each glucose check. ‘You must inject into your stomach, directly into the skin – never through clothes, and rotate injection sites every single time.’ I committed to memory the part of my stomach to use and visualised a circular chart to help remind me to move where I stabbed.

Fast forward about a week into diagnosis. Needle changed once a day (which then, in following weeks, became once every second day, every third day, once a week… or when ‘ouch – I really felt that’); I forgot that lancets could be changed; speared (reused) needles directly through jeans or tights into my thighs, having no idea which leg I’d used last time.

And then there were insulin doses. ‘You must take XX units of insulin with breakfast, XX with lunch and XX with dinner. That means you need XX grams of carbs with breakfast, XX with lunch and XX with dinner. These amounts are set and cannot be altered. You must eat snacks.’ I took notes and planned the weekly menu according to required carb contents. Within a week, I’d worked out that if I couldn’t eat the prescribed huge quantities of carbs, I could take less insulin and that all seemed to work out okay. And I worked out how I didn’t need to have the same doses each and every day. It was liberating!

I switched to an insulin pump and the instructions came again: ‘You must change your site every three days without fail.’ I promised to set alarms to remind me and write notes to myself. ‘Cartridges are single use,’ I was told and vowed to throw them away as soon as they were empty. Today, sometimes pump lines get changed every three days, sometimes three and a half, sometimes four and sometimes even five. Cartridges are reused at times…

I was also told to never change any of the settings in my pump unless I spoke with my HCP. But part of getting the most from a pump (and all diabetes technology) is about constantly reviewing, revising and making changes. I taught myself how to check and change basal rates – slowly and carefully but always with positive results. (For the record, my endo these days would not tell me to never change my pump settings.)

CGM came into my life with similar rules, and as I became familiar with the technology and how I interacted with it, I adapted the way I used it. Despite warnings of never, ever, ever bolusing from a CGM reading, I did. Of course I did. I restarted sensors, getting every last reading from them to save my bank balance. I sited sensors on my arms, despite warnings that the stomach was the only area approved for use. I started using the US Dex 5 App (after setting up a US iTunes account and downloading from the US App Store) because we still didn’t have it here in Australia, and I wanted to use my phone as a receiver, and seriously #WeAreNotWaiting.

And today…today I am Looping, which is possibly the extreme of using devices off label. But the reason for doing it is still the same: Trying to find the best ‘diabetes me’ for the least effort!

The push back to curating our diabetes treatment to fit in with our lives is often frowned upon by HCPs and I wonder why. Is it all about safety? Possibly, but I know that for me, I was able to always measure the risk of what I was doing off label and balance it with the benefit to and for me. I believe I have always remained as safe as possible while managing to make my diabetes a little more… well, manageable.

It can be viewed as rule breaking or ‘hacking’. It can be thought of as dangerous and something to be feared. But I think the concerns from HCPs go beyond that.

As is often the case, it comes down to control – not in the A1c sense of the word, but in the ‘who owns my diabetes’ way.

When we learn how things work, make changes and adapt our treatment to suit ourselves, we often find what works best is not the same as what we are told to do. And I think that some HCPs think that as we take that control – make our own decisions and changes to our treatment – we are making them redundant. But that’s not the case at all.

We need our HCPs because we need to be shown the rules in the first place. We have to know what the evidence shows, and we need to know how to do things the way the regulators want us to do them. We need to understand the basics, the guidelines, the fundamentals to what we are doing.

Because then we can experiment. Then we can push boundaries and see what is still safe. We can take risks within a framework that absolutely improves our care, but we still understand how to be safe. I understand the risks reusing lancets, or stretching out set changes by a day or two. Of course I do. I know them because I’ve had great HCPs who have explained it to me.

Going off label has only ever served to make me manage my diabetes better. It has made me less frustrated by the burden, less exasperated by the mundanity of it all.

And the thing that has made me feel better – physically and emotionally – about diabetes more than anything else is using Loop. So, use it I will!


It seems silly to have to say this, but I will anyway. Don’t take anything I write (today or ever) as advice. I’m not recommending that anyone do what I do and I never have.  

Last night, I attended an event at Parliament House in Canberra, acknowledging and celebrating two milestones: 60 years of Diabetes Australia and 30 years of the National Diabetes Services Scheme (NDSS).

I spent the night chasing down people who were instrumental in the establishment of the NDSS to thank them for their efforts and try to explain just how significant the Scheme has been in my diabetes life for the last (almost) 20 years.

I never knew diabetes before the NDSS. On the day following my diagnosis, after spending the morning seeing my new best friends (endo, CDE, dietitian…actually, the dietitian and I never hit it off), I took a couple of freshly-filled-in forms to 100 Collins Street in the city and took a creaky elevator to the third floor. It was there I was introduced to the NDSS. I handed over the registration form and then the order form. Box after box was piled onto the counter in front of me and I looked at the unfamiliar words on unfamiliar boxes wondering where I was going to put it all and how much it was going to cost.

A few boxes of needle tips for insulin pens and a few boxes of glucose strips and a box or two of urine strips. It was tallied up and I was surprised that it wasn’t a lot more expensive. I was given a card and told to bring it in any time I needed further supplies.

As I came to learn about diabetes in other countries, I realised just how unique the NDSS is and how fortunate we are in Australia to have it.

I proudly speak about the NDSS to diabetes friends from all over the world. Often, these friends are astounded that the NDSS is free to join and available to everyone with diabetes. They are astonished that the price of diabetes supplies is the same for everyone and not reliant on insurance. Often they can’t get their head around the idea that we can choose which strips to use for which meter we prefer, with no interference from an insurance provider. And they simply cannot believe that while there are some limitations to the quantities that we can purchase, the amount we can access is actually quite significant, and there are allowances and exemptions for people who need more than the limits determined by the government.

The NDSS is more than a diabetes supplies program. It is intrinsically linked with Diabetes Australia who was instrumental in the establishment and implementation of the NDSS back in 1987. Diabetes Australia continues to administer the NDSS and runs all the services associated with the Scheme – from diabetes camps, information events, information resources and support services.

But more than that, Diabetes Australia continues to lobby the government to extend the NDSS. More than five years of consistent lobbying resulted in the CGM initiative being announced and launched, and Diabetes Australia is actively urging the broadening of initiative to include other groups of people with diabetes who benefit from CGM (as outlined in the original joint submission from Diabetes Australia, JDRF, ADS, ADEA and APEG). Back in 2004, following a similarly consistent campaign, pump consumables were added to the Scheme. Recently, Diabetes Australia’s responded to the stakeholder engagement regarding the listing of Freestyle Libre on the NDSS with this submission. From the initial lobbying for the introduction of the NDSS to today, the link between Diabetes Australia and the NDSS has resulted in supporting people living with diabetes and making our lives easier.

The NDSS remains the only scheme of its kind in the world. It has enjoyed bipartisan support from consecutive governments.

Of course, our health system is not perfect here in Australia. I believe that there should be more funding and more subsidies on the NDSS. I don’t believe in restricting access to glucose strips for people with type 2 diabetes not using insulin. I know that a lot of people still find the cost of diabetes prohibitive and there is still a divide between those who can afford the latest technologies and those who cannot.

But the NDSS does go a long way towards lessening the burden in some ways and I certainly am glad – and proud – that we have it.

Disclosure

I have been an employee of Diabetes Australia (and Diabetes Victoria) since 2001. I cover all costs for all NDSS products I use.

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